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No episodes

Rubeanie Message
10 Dec 2020, 05:16 AM

I was first diagnosed with SCLS in 2016 by a wonderful doctor at the Mayo Clinic.  Since having my first major episode which required 3 days in the ICU, and not knowing if I was going to live or not, I have not had another major episode or have been hospitalized for more than a few hours.  My question is, is it possible that my SCLS is gone?  I keep "waiting " for another major episode.  I currently see a doctor who monitors my blood work. 

WazzaACT Message
10 Dec 2020, 06:28 AM

Hi Rubeanie. I am not sure the full treatment you are receiving but for me before IVIG treatment I went 7 years between my first 2 major attacks, then 3 years, then I nearly died. After the 3rd attack I was fortunate enough to be placed on the standard 2gm/kg/4 week treatment and I have not had an attack in over 9 years. I hope this helps.

rnuara Message
10 Dec 2020, 01:00 PM

Rubeanie, I too went many years between episodes, the longest being 10 years.  I thought I was over having SCLS attacks but that wasn't the case.  My last attack that was nearly fatal, was in 2013.  Since then I have been on IVIG 2gm/kg every 4 weeks, fortunately without any attacks.  If you are not currently on IVIG, I strongly recommend that you discuss this with your doctor and go on IVIG immediately.  It is a life saver.

Rita Wood Message
11 Dec 2020, 05:37 PM

I was taken off of IVIG for 12 months because of reactions to it. After 12 months I had a life threatening attack. I am now on IVIG very two weeks and am treated with premeds before receiving IVIG. It has been almost four years and as far I am doing okay...not great but I am here for my family.


Arielbatt Message
12 Dec 2020, 02:33 PM sumo a las recomendaciones, es una enfermedad muy traicionera. Si existe la más mínima posibilidad de pelear por IVIG, le recomiendo que lo haga. Cada ataque de SCLS suele ser peor al anterior.


krogers Message
14 Dec 2020, 06:38 PM

Stopping IVIG is a huge gamble with your life Rubieane.  It only takes an episode to kill you.  So maybe you will not have any more leaks if you stop IVIG but on the other hand there is the real possibility you could die.  It's your choice but for me I will stay on the IVIG.

Rubeanie Message
15 Dec 2020, 04:46 AM

Thank you all for your responses.  I have never been on IVIG.  My doctor has brought it up as to whether or not to go on it and we have both decided not to at this time.  I do carry a treatment protocol with me all the time in case I do have a major attack.